Helen Osborne: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month and author of the book Health Literacy from A to Z: Practical Ways to Communicate Your Health Message. I also produce and host this podcast series, Health Literacy Out Loud.
Today, I’m talking with Dr. Paul Han, who is Senior Scientist in the Division of Cancer Control and Population Sciences and Adjunct Investigator in the Division of Cancer Epidemiology and Genetics at the National Cancer Institute.
Dr. Han’s research focuses on understanding and improving the communication and management of uncertainty in healthcare.
His clinical background is in general internal medicine and palliative medicine.
I’ve long been intrigued with how we communicate about uncertainty in healthcare. Happily, a colleague suggested I interview Dr. Paul Han. I’m so glad he agreed to be a guest on Health Literacy Out Loud.
Dr. Paul Han: Thank you, Helen. It’s a real pleasure to be here today with you.
Helen Osborne: Uncertainty in healthcare. I have my own notions about what that is, but you’re the guru on this. Explain to us all what you mean by uncertainty.
Dr. Paul Han: First of all, I don’t consider myself a guru on this, although uncertainty is certainly something I’ve thought about for a long time both as a clinician and a researcher.
The definition I’ve come to in putting together my own experiences and the research on the topic is that it’s a mental state. Specifically, it’s a conscious awareness of our ignorance.
Helen Osborne: Kind of like we know that we don’t know something?
Dr. Paul Han: Exactly. That’s what really distinguishes it from ignorance itself, which is simply the state of not knowing. Uncertainty I think of as a higher order knowledge. It’s a knowledge that we don’t know. Psychologists call this a meta-cognition. It’s thinking about our own thinking. In that sense, it’s a kind of knowledge in and of itself.
Helen Osborne: I know you are working at a high level to do a lot of research about this. But when you think about uncertainty, are you talking about scientists, physicians and people like that being uncertain about what might happen in any situation? Are you talking about patients and family and the public being uncertain?
Dr. Paul Han: I think I’m talking about all of us, because it is such a universal mental state. It’s really part of the human condition.
I think the public, all of us as laypeople, as patients, we all experience this conscious awareness of our own ignorance every day and at every moment, in fact. Scientists, researchers, physicians, clinicians, healthcare professionals, we all also experience that same mental state.
It’s really a question of “What’s the object? What happens to be the object of our uncertainty at any given moment?” But I think it’s such a universal human experience.
Helen Osborne: When I think of that, I get the creepy-crawlies, like, “I just want to know something. Tell me something.” Is this uncomfortable for most people? I certainly can feel that sense of discomfort when I know that I don’t know something but I wish I did.
Is it uncomfortable? Is there an upside to this? Tell us about that feeling state a little bit more.
Dr. Paul Han: It’s absolutely uncomfortable. That’s why it’s such a problem. There’s also, I think, a very deep human fear of the unknown. Any time we’re reminded of what we don’t know, that’s a very aversive state. It makes us feel at risk, vulnerable and insecure. It causes fear. It prevents us from making decisions and makes us feel paralyzed in that sense.
There are all of these negative, aversive psychological reactions that we all have to uncertainty. That’s what really makes it so difficult and gives us the creepy-crawlies, as you put it.
Helen Osborne: Does it have any upsides to it? It’s a state of life. Are we always going to go around feeling miserable about what we don’t know? This is your life’s work. Tell us more, Paul. Is there an upside to this?
Dr. Paul Han: I think there is an upside. There’s no doubting or challenging the fact that part of our human nature is really averse to uncertainty. That’s one side of the coin, certainly.
But the other side, as I mentioned, is that it is, if you think about it, a form of knowledge. It’s definitely very helpful and adaptive for us to know what we don’t know and the limits of our knowledge.
That helps us to face life with the appropriate amount of caution, and it prevents us from being overconfident or excessively certain about what we do know, which can really get us into trouble.
Some amount of uncertainty in that sense, as a form of wisdom, is really important for us to live our lives.
In part of my work as a palliative care physician, I’ve dealt with people who are at the end of their lives or who are dealing with very serious illnesses. For them, uncertainty can actually be a source of hope and possibility.
We often don’t think about it that way, but if you think about it even in our daily lives, the fact that we’re uncertain about our future is really how we find meaning. It’s what gives possibility to our lives and helps us to have goals and to actually work for them.
Helen Osborne: I’m comforted hearing how you are framing that. I’m thinking of people I know who are facing the end of life. Some of them do have hope.
I know people ask, “How long do I have to live?” or however they might word that, and I know that their doctors often try to not be too specific. But sometimes people find meaning in that because their outcome is not exactly the most dire.
Dr. Paul Han: Exactly. There’s a lot of discussion about this, certainly, in medicine. It’s a tricky topic because people worry about patients or others having so-called unrealistic hope or being in denial about their true prognosis, etc. Yet some measure of uncertainty and a belief in possibility is, I think, essential for people’s wellbeing.
This is just one specific circumstance, but if you think about it, all of us really live for possibilities, even if they’re low-probability events. That’s what really drives our human lives.
I think it is important, uncertainty that is, in that sense as a really central part of our lives, and not simply negative and aversive, but there’s really a positive aspect to it also.
That’s very hard to convey and to have people keep in the forefront of their minds when they’re facing a very fearful threat. Of course, the whole world is facing the threat of COVID right now.
It’s a tricky balance that we have, both being averse to uncertainty as we naturally are but also seeing the positive sides of it, and striking a balance between having simply negative reactions and also seeing the value and necessity of it, and striking a balance that we can actually live with it.
Helen Osborne: I really appreciate how you’re framing that and that you are learning so much more about this.
You used the word “convey,” how we convey that. Our listeners, that’s what we do. We all convey messages. We might be clinicians, public health, educators or community folks. We all want to communicate about health in ways that patients and the public can understand. But yet we’re faced with this dilemma of uncertain information.
I welcome your tips and strategies. I’m sure all our listeners do. What can we do to make it a little bit better?
Dr. Paul Han: That’s a really important and difficult question that I certainly don’t have any final answers to. In my field and the reason that I’ve chosen to really focus on this in my own work is that we need more good evidence about exactly how to communicate uncertainty in a way that’s helpful to people.
We have some evidence, but all the answers aren’t in. In essence, we’re uncertain about how to communicate uncertainty.
Helen Osborne: Oh, dear.
Dr. Paul Han: But I do think that we know enough at least to tolerate that uncertainty about communicating uncertainty. I do think that there are some things that we can keep in mind even as we wait for better evidence.
Among these, first of all, is to simply acknowledge that it’s a necessity to communicate uncertainty in most circumstances. I say most because there are some circumstances where I don’t think it’s a priority to communicate uncertainty. We’re still trying to learn about what those circumstances are and particularly in what individuals.
But in many cases, and probably more cases than we think about now, I think it’s essential to communicate uncertainty for a number of reasons. And here, I’m talking more about scientists, researchers and clinicians.
Helen Osborne: Can you give us some wording?
Dr. Paul Han: On how to do that?
Helen Osborne: Yes. Just an example of how we might convey to others, “We don’t know everything right now, but here’s the best of what we know.” I’m just making up words, but you do this all the time. How would you communicate and acknowledge that something is uncertain at the moment?
Dr. Paul Han: What you just said is perfect. I mean that. Really, we saw examples of that in the COVID pandemic. My colleagues and I have actually studied this. We studied wording to use about how to talk about all the uncertainties around the COVID pandemic.
For example, we don’t know how long this pandemic is going to last, or how effective this drug is going to be, or how effective this vaccine is going to. But our best evidence suggests X, Y or Z.
Even that simple admission that we don’t know, I think, is just so important.
Now, a lot of communicators worry that if you do that then nobody is going to have trust, or people are going to doubt what you say. But I think that the next step beyond that simple admission is to try to normalize uncertainty.
This is a topic that my colleagues and I have gotten very interested in and have some emerging evidence about.
It’s simply admitting that, yes, we don’t know, but in essence this is normal. This is an expected state of affairs. At this point in time, for example, we’re still waiting for evidence, but our best evidence shows this. We will update this as more studies come in or we obtain more or better evidence.
But it’s also conveying the fact that this is subject to revision. When we do have better evidence, we may update these recommendations.
Helen Osborne: That’s almost letting them know what’s going to be ahead. I was just taking notes. It’s to acknowledge or admit that this is incomplete or uncertain information, to normalize it, that this happens in many situations, and to look ahead to the future and make a promise that I hope people keep of, “We will let you know as we learn more.”
Dr. Paul Han: Exactly. I think one reason why that’s important is that we have to set the appropriate expectations. Some researchers call these epistemic expectations, or expectations about what we know and what we can know and when we will know more.
In this sense, it structures our uncertainty then. It sets some targets in saying, “We don’t know now, but we anticipate knowing a little bit more at this point. Our evidence and recommendations might change, but we’re with you. This is a process that has to unfold.”
Helen Osborne: We’re living through that in COVID.
Dr. Paul Han: Exactly.
Helen Osborne: But what happens for all of us who are communicators in print? Many of us work on written information that doesn’t keep coming out, doesn’t get revised over and over again. What can we do if we are writing about a disease, a condition or an emergency and information is uncertain?
Dr. Paul Han: That’s a good question. My own sense is that these same principles can be applied, although, obviously, they can’t be updated so dynamically like if we’re talking in person or there’s a news story.
But I think that even in written communication that’s going to have a little bit longer of a life before being revised, it’s possible to apply the same principles and really admit not only the fallibility of our knowledge but the changeability of it, the fact that this could change and that’s normal. That’s a part of science, and it’s not an indication that we’re using flawed methods or that our intentions are malicious.
Of course, the big backdrop to all of this are the huge political forces that are causing polarization and misinformation and disinformation.
I’m putting that aside for a second just to talk about what we as scientists can try to do to at least set the appropriate expectations and to inoculate people against this excessive certainty that can then make people turn around and, when the evidence or recommendations change, immediately think that the whole system is flawed, when in fact this is actually the way the system works. We need to really educate people about that.
Helen Osborne: Certainly that’s the case as we hear about clinical studies and things. If they find a problem, is that good or is that bad?
It sounds to me, the way you’re describing this, is that we need to be certain and convey certainty that the fact that information will change. We need to be certain about uncertainty in that way and express that.
I don’t know if the public knows that. You’re talking about some public health situations. The example certainly is COVID.
Would it be the same in a clinical situation, that you would go through these same steps, to acknowledge what you don’t know and then look to the future?
Dr. Paul Han: Absolutely. I think that that’s where a lot of my thinking originates from, is thinking about clinical scenarios.
I can tell you in my own experience that there have been many times where I’ve felt that reluctance to convey uncertainty, which is widely shared by many clinicians.
There’s been a lot written about that topic, about why people don’t talk about uncertainty. There’s a discomfort that you don’t want to convey that you’re somehow incompetent, and you need to convey this veneer of objectivity, truth and power.
But I think that in my own experience, I can point to many times where the best thing I did was to say, “I don’t know what’s going on.”
That then opens up a partnership with you and the patient where you can admit that medical science doesn’t have an answer to what the right thing is for you or what’s going to happen to you as an individual, but we’re in this together. What we need to do is to face the uncertain future together, and there are ways that we can do that.
I think that comes to my third point. I think the third strategy is we have to rely on this building of relationships and providing emotional support and to reassure whether it’s the public or the patient in front of you that they’re not being abandoned. We’re actually going to face this uncertain future together.
I think that emotional and relational support often is far more important than further information.
If you think about it, in an uncertain situation where science doesn’t have the answer, more information at the moment is not going to help at all. We really need to turn to other strategies, which is really where emotional and relational support come into play.
Helen Osborne: Wow. I can feel that. I almost am comforted talking about that. When you talked about admitting that we don’t know something and the reluctance of people who are supposed to know stuff in power can do that, that’s very powerful, too. Then you get to that human interaction.
There’s a term that I use, and I came up with this years ago, called The Ethics of Simplicity. How do we convey information clearly and simply and in ways others can understand? We, as the communicators, are making a lot of choices about that.
It sounds like, when it comes to uncertainty, it’s uncomfortable for us as professionals. It can be uncomfortable for the receiver of the messages.
I don’t have the answers for how to do it. You’re giving us some good tips and strategies to do so. But how do we do that in ways that are meaningful to the other person?
Dr. Paul Han: That’s the unanswered question. I don’t have a final answer, and nor do I think that there is one right answer. In fact, that’s the bigger meta message that I think we’re sending, whether it’s to the patient or the general public. For many of these things, there is no one right answer, and that’s discomforting to us as communicators.
But on the other hand, that’s where the art of medicine and public health practice comes into play. It’s recognizing that there isn’t necessarily a right answer but that we’re going to find that and do our best.
I really love your term The Ethics of Simplicity, because I think that’s where we really need to focus in terms of communicating by eliminating as much complexity as we can.
Complexity itself is a source of uncertainty. If you were confronted by a barrage of information and all these conditions that depend on one another or multiple facets of a problem, that complexity alone is a source of uncertainty, and we’re very averse to that.
I agree with you completely. We have to find ways of communicating uncertainty that don’t add to the uncertainty by causing more complexity to what we’re trying to say.
I don’t have one answer to that, although I think it’s so important.
I will say that often when I’ve been in situations, especially with helping patients and their families at the end of life, what I’ve seen is often that simple admission of “I don’t know” . . . and that’s a pretty simple statement, at least on the face of it. I’ve seen people get so relieved because they’ve labored under the assumption that there is one right answer and they need to find it.
Sometimes admitting that we don’t know what that is and we’re just struggling to find it together is liberating.
That doesn’t mean we don’t have to work to do that. But we have to end up at this place where we can admit our uncertainty and be comfortable with it.
Helen Osborne: Paul, I’m going to put a semicolon in this conversation. I am reassured that you find that concept of The Ethics of Simplicity worthwhile.
I hope that you and I can later continue down this path somehow together. I’m interested from the perspective of health literacy and plain language, and you’re interested in it from the perspective of a scientist, physician and deep thinker on it. There’s a lot of work ahead.
Dr. Paul Han: Definitely.
Helen Osborne: Thank you for explaining about uncertainty to all of us.
For people who want to learn more about this, can you highlight some resources?
Dr. Paul Han: There’s definitely a ton of stuff that’s been written about various aspects of uncertainty. I think that’s somewhat of a challenge because you’ve got people from various different disciplines, not only medicine but psychology, sociology, anthropology and all the social sciences and humanities.
There’s so much that’s been written about this, and that’s really made it both interesting and challenging as a researcher to try to integrate all of this. But there are definitely people who have been trying to tackle different facets of this.
I’m not sure I can point to a single resource, but definitely there are things out there that people can look at when they’re trying to navigate their way to better understand what this means.
Helen Osborne: Thank you. We will put a few of those resources on your Health Literacy Out Loud web page. Hearsay has it you have a book coming out on this topic.
Dr. Paul Han: Yes, I do, actually. Later this year, in the summer, I have a book coming out called Uncertainty in Medicine: The Framework for Tolerance.
In that book, I try to articulate in a little bit more detail some of these ideas and basically try to provide an orienting conceptual framework for people to think about uncertainty and how we can tolerate it better.
Helen Osborne: Thank you. Thank you for all you’re doing, Paul, for thinking about this, for giving us some tips and strategies, for providing the resources, for writing the book and sharing it with us on Health Literacy Out Loud. I really valued this conversation. Thank you for being a guest.
Dr. Paul Han: Thank you so much, Helen. It’s been a pleasure.
Helen Osborne: As we just heard from Dr. Paul Han, it’s important to communicate clearly even when there’s an aspect of uncertainty and information we’re not all that sure about. But communicating clearly and simply is not always easy.
For help clearly communicating your health message, please take a look at my book Health Literacy from A to Z. You might be especially interested in my chapter about “The Ethics of Simplicity.”
New Health Literacy Out Loud interviews come out every few weeks. You can get them all for free by subscribing at www.HealthLiteracyOutLoud.com, or wherever you get your podcasts.
Please help spread the word about Health Literacy Out Loud. Together, let’s tell the whole world why health literacy matters.
Until next time, I’m Helen Osborne.